It’s time to expand assisted-dying legislation to include advance directives for dementia

By Stuart Chambers

A version of this commentary appeared in the Toronto Star, the Vancouver Province and the Huffington Post

The assisted-dying bill (Bill C-14) was passed in Canada almost a year ago, but not without its detractors — on both sides of the issue.

Opponents of the bill were concerned that vulnerable populations, such as those with disabilities or mental health issues, might opt for this extreme measure as a result of inadequate or non-existent health and social supports. Proponents of assisted dying, on the other hand, felt the law did not go far enough because it is limited to those whose deaths are ‘reasonably foreseeable,’ thus preventing those with chronic or neurological conditions from having an autonomous choice to end intolerable suffering.

Now, a year on, there are lobbying efforts underway to expand the assisted-dying legislation to include advance directives. In the case of dementia, advance directives are the right path forward — from both a legal and ethical perspective. Here’s why.

Advance directives are legal documents that allow patients to spell out their wishes concerning end-of-life care. When medical decisions are required, the document helps to avoid confusion about one’s true desires in case of ailing health or incapacity.

For starters, opposing viewpoints are often inconsistent. One of the primary claims against advance directives for assisted dying is that they do not protect patients who can no longer make or express decisions for themselves. But patients in various states of unconsciousness — for instance, those who experience severe head trauma or who ingest a fatal overdose of drugs — are already incapable of making end-of-life decisions. Yet, acting as a legal surrogate, the next-of-kin can request termination of a family member’s life-prolonging treatment, often without prior knowledge of the patient’s wishes.

Another common critique forwarded by detractors suggests that many doctors might find it difficult to comply with euthanasia requests because the individual who signed the advance directive may be, in many ways, a different person psychologically than the person they are now. Yet, this is precisely why some individuals demand the right to sign advance directives.

For some, losing the ability to think rationally is an affront to personal dignity. Depending on the condition, the person may not be able to recognize their former self; they may no longer be that person. Biologically speaking, the patient is alive, but in the case of dementia, some may believe one’s “biographical life” is essentially over.

Finally, critics often point out that family members may deny a proactive request for euthanasia in cases of dementia because they are uncertain about the patient’s current state of mind or degree of suffering. Yet these same feelings of anxiety already exist in situations where family members must determine when to stop medical interventions.

In other words, whether the patient’s life ends by a negative act (withholding nutrition and hydration) or by a positive act (lethal injection), families would experience similar doubts and anxieties. The point of an advance directive is to prevent another’s moral sensibilities or angst from overriding an individual’s preference for euthanasia.

Many critics of advance directives agree that constitutional rights to autonomy are important but so is the protection of those who are vulnerable. These types of divisive arguments — the kind that pit “dangerous” euthanasia advocates against the “defenseless” — are no longer persuasive in a post-Carter era.

In deciding Carter v. Canada (2012), Justice Lynn Smith found that the claim of “abuse against vulnerable populations” was empirically unsound and that the risks associated with legally permitted assisted death had “not materialized” in the manner that had been predicted. In 2015, the Supreme Court of Canada — in a unanimous decision — agreed with Justice Smith’s findings.

In other words, there is no reason to think we can’t strike a balance of rights with safeguards.

Advance directives that include euthanasia for future dementia would help make clear, and preserve the right to, a patient’s choice. It would also prohibit governments, hospital authorities or family members from imposing their own version of the good life — or good death — on the patient.

Stuart Chambers, Ph.D., is an expert advisor with EvidenceNetwork.ca and teaches a course on death and dying in the Interdisciplinary School of Health Sciences at the University of Ottawa. His dissertation explored the death and dying debate in Canada. schamber@uottawa.ca

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